By PAULA SPAN
The New Old Age Blog, New York Times
January 24, 2011
Jean Minarick has had a tough few weeks, grappling with one of the crossroads decisions that family members so often shoulder for ailing elders. “I’ve been a wreck,” she said.
She has known and loved her Uncle Lawrence, now 87 and living in a Virginia nursing home, since he moved into her parents’ home when she was a little girl.
A onetime coal miner, he has always needed family help — a cyst in his brain caused lifelong cognitive difficulties. He hasn’t eaten solid food for three years, Ms. Minarick told me, but has done reasonably well on thickened liquids. And at their weekly visits, he can still talk with her, though mostly about the past.
Lately, however, he’s grown awfully thin. When his weight reached 132 pounds, down from 165, she took her concerns to the staff. “He might be a candidate for a feeding tube,” a nurse suggested. Sometimes, the nurse added, people improve and start eating again and the tube can be removed.
“I just don’t think that’s very likely,” Ms. Minarick told me. She knows a fair amount about the pluses and minuses of tube-feeding in the elderly, having faced a similar decision for her father last spring. (I probably should have said that when it comes to caregiving, Ms. Minarick, a federal employee in Washington, has had a tough 10 years.)
She also knows that her uncle’s dementia will not abate.
Few questions are more upsetting to families than this one. Providing nourishment is, from the first moments of life, an elemental way for humans to demonstrate love and care. Saying no to a feeding tube can feel tantamount to allowing a loved one to starve. I sometimes wonder if it’s actually easier, emotionally, to decline CPR or a ventilator; we may not feel responsible for keeping relatives’ hearts beating or lungs functioning, but we have trouble overriding our impulse to feed them.
“Maybe he’ll just go peacefully in his sleep and not be subjected to this,” Ms. Minarick said, struggling to figure out what to do for her uncle. Her voice on the phone sounded quavery. “I’m 99 percent confident that a feeding tube is not the right thing, but there’s always that doubt.”
Let’s be clear: Many times, families will be grateful that doctors know how to insert a tube directly into the stomach to deliver food and liquids. It makes sense for an accident or stroke victim who appears likely to recover, for example, or for someone with Parkinson’s disease who can’t swallow but otherwise can function and enjoy her life.
“Someone like Gabrielle Giffords needs a feeding tube,” said Dr. Susan Mitchell, a senior scientist at the Hebrew SeniorLife Institute for Aging Research in Boston, who has studied tube use for years. But for people with irreversible conditions who are nearing death, the gains are harder to discern, and the disadvantages mount.
Dr. Mitchell ticked off the research findings for me. “We can’t demonstrate any survival benefit,” she said, meaning there’s no evidence the procedure can prolong life. It’s clear, though, that the tubes don’t prevent aspiration — patients can still draw saliva or regurgitated bits of food into their lungs, which frequently causes pneumonia.
The tubes occasionally leak or become blocked or infected, necessitating hospitalizations; they can cause nausea, vomiting or diarrhea. Patients with advanced dementia can’t understand what’s going on, so “they tend to get agitated and try to pull out the tubes,” Dr. Mitchell said, which in turn leads to the use of restraints or psychotropic drugs.
Families often fear that without artificial nutrition and hydration, their relatives will suffer from hunger or thirst. But when researchers talked to cancer patients who were close to death but lucid, Dr. Mitchell said, they didn’t describe painful sensations.
She recommends this guide from the Ottawa Hospital Research Institute to help caregivers reach decisions on tube-feeding when their relatives can’t communicate their own opinions.
This, in part, was what troubled Ms. Minarick and her sister, providentially a nurse in a gastroenterology lab.
They had declined a feeding tube for their father when a fall caused a serious brain hemorrhage, partly because his doctors explained that there was little hope for recovery, but mostly because he had made his wishes clear in a living will.
“It’s horrible stuff to have to do,” Ms. Minarick said. But because she knew she was following his instructions, “I didn’t find it a struggle.” Her father died 10 days later.
Her uncle has no such document; years ago, a lawyer said he wasn’t competent to make such decisions. Though her uncle had told her he didn’t like hospitals and wanted to die at home, in the old-fashioned way he remembered from boyhood, Ms. Minarick has power of attorney but no advance directive. That makes the decision harder this time.
So she is grateful for a compassionate doctor she’d spoken to occasionally but never met, the family practitioner who cares for the patients at her uncle’s nursing home. He spent almost half an hour talking with her last week about the feeding tube and other options, and about her uncle’s comfort — her overriding concern.
(Brief digression: Had the Obama administration not stripped the provision from the new health care law, Medicare would reimburse doctors for such lengthy discussions about end-of-life choices. Now, it won’t.)
Ms. Minarick and the doctor finally agreed to forgo the feeding tube and add a “do not hospitalize” order to her uncle’s existing “do not resuscitate.” She and a friend will come several times a week to see if they can persuade Uncle Lawrence to drink more chocolate-flavored Ensure.
Meanwhile, the doctor will certify him for hospice care.
“I thanked him profusely,” Ms. Minarick said. “It’s distressing, but I’m also very relieved.”
Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”